We’ve been having a lively debate about whether or not parents should be able to record their interactions with professionals, and there’s a piece over at the Guardian about it http://www.theguardian.com/society/2015/jun/17/social-workers-under-scrutiny-parents-camera
I’ve today come across a Court of Protection case, decided by Newton J.
St Georges NHS Healthcare Trust and P 2015
Neutral Citation Number:  EWCOP 42
[There is also a Reporting Restriction Order in place, meaning that the family or patient should not be named. I had been nervous about the link above having a surname in it, but on making enquiries I’m reassured that it refers to one of the doctors involved, not the family surname]
This case involved a very ill man who had had a heart attack and due to a long period of time before being revived suffered hypoxic brain damage. There was agreement that if he had another cardiac arrest he should not be resuscitated.
The hospital had applied to Court for a declaration that they be allowed to withdraw treatment (renal replacement therapy) which would have the impact of causing the man to die. The family were opposed to this and were arguing that the man was showing signs of consciousness. They were saying that he was in a Minimally Conscious State (MCS) and thus he could, though on a very low level, show some responses. The hospital opinion was otherwise and that the man had no responsiveness and thus no quality of life.
The bit of relevance for us is here:-
The family have always properly and steadfastly maintained and argued their position. But for their politely and cogently articulated stance, it may well have been that renal replacement therapy would have been stopped, and P would already no longer be alive. They endeavoured to support their efforts by the taking of video recordings of occasions when they said that P had responded to verbal communication. That position was strongly opposed by the Health Trust who contended concern about the privacy and dignity of other patients and offered the services of the Trust’s medical photographer. Surprisingly the Court was required to make a decision that they were (a) able to do so and (b) could rely in Court on those recordings. In fact those video recordings provided a watershed insight to the proper conclusion in this case. As I say, but for their persistence, and the consequent anxiety of the Official Solicitor I could have so easily concluded on inadequate evidence, as it transpired, a conclusion that would have led to P’s demise.
Breaking this down :-
A) The family said that they could see signs of response from the man, and the hospital disagreed
B) The family wanted to film the man, so they could prove that he was showing these signs of response
C) The Hospital opposed this, and the Court had to hear argument about it, and decided that the family could film him
D) The film proved what the family were saying, and were vital in the case
E) The man is still alive, because of that filming process
You can’t really get a stronger illustration than that.
As a result of the Judge seeing the video recordings, he ordered further assessment, that assessment concluded that the man was indeed in a Minimally Conscious State not a persistent vegetative state. Somewhat oddly, that conclusion led to the hospital asking for other treatments to be withdrawn. (I can’t quite understand this myself, but the case had clearly got quite polarising)
The hearing has lasted five days over a considerably adjourned period, judgment being delivered on the 6th
It is a very unsatisfactory way of conducting such a hearing. Having seen the very powerful and affecting video recordings of P myself on day 3 it became abundantly clear that further and proper assessment and enquiry was absolutely necessary and essential. As a result Helen Gill-Thwaites, a specialist occupational therapist, continued and carried out the further assessment using the internationally respected assessment process known as SMART. Additionally Mr Derar Badwan, a leading expert in neuro rehabilitation directed the optimum circumstances for that and his own subsequent opinion to be investigated and formulated. Their united opinion and evidence was that at this stage of assessment it was clear, as the family had always contended, that P was in a minimally conscious state. I confess I am very troubled that in apparent response to that expert opinion the Trust’s reaction (without issuing a further application) was to apply to withdraw a whole raft of other treatments. That inexplicable development seemed to me at best to illustrate the widening the gulf between the family and those who were treating P, at best a hardening of mind. That view was fortified further when it subsequently emerged during the course of evidence (when Dr Dewhurst resumed evidence) that Dr Khan, the consultant neurologist responsible for P’s treatment, had recently changed his mind and now considered that P was in a minimally conscious state and had emailed that view to the Trust’s solicitor. All counsel seemed unaware of that development; certainly the Court was, and it is disappointing that this important information should in fact surface in this way. I do not think this represents bad faith but a reflection of the litigation as a whole. As I have already made clear I do not doubt the very great sincerity of the consultants involved in the care of P, but having regard to the Court’s strong presumption in preserving the sanctity of life and of the overarching principle that should be borne in every case with this background it was a surprising development. The law regards the preservation of life as a strong fundamental principle.
The Judge describes what nearly happened here (and the absence of the testing process which is recommended in the guidance) as a ‘cataclysmic injustice’. It is somewhat rare to see the word ‘cataclysmic’ used and to not immediately conclude that the author is wildly over-stating things. This is one of those rare occasions when it was in my opinion merited. [Bracing myself now for my commentator Andrew informing me that it should be confined to natural disasters or large scale tragedies]
This nugget is astonishing – in these cases, the rate of mis-diagnosis (i.e hospitals deciding that a person is NOT in a Minimally Conscious State and getting that wrong ) is 40%. Forty per cent… Of something as vitally important as that.
I have been told in this and in other cases that misdiagnosis (of people who are said to be in a vegetative state but are in truth in a minimally conscious state) occurs in a remarkably high number of cases, the rate of misdiagnosis is said to be some 40%.
It is something of a wake-up call – if medical evidence can be wrong about something so vitally important as whether a man would have any awareness if treatment was withdrawn, then we need to be cautious about it when it is something which is less concrete and more speculative (such as a person’s ability to change, or whether they might or might not sustain a separation from another person or abstain from substances)
It is a very interesting and moving case, and once I am sure that the link does not accidentally give away something that it should not, I will share it with you.